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@bethr - my lab assesses serum ferritin of 300+ as overload (though i've seen it mentioned that 200 can be considered toxic by some). my neighbour with hemochromatosis can tell how high his ferritin is by how long since his last phlebotomy and what the result was at last ferritin test. he can get up into the 400 range.

@everyone

Serum ferritin, transferrin and soluble transferrin receptor levels in multiple sclerosis patientsAbstractOver the last few years, increased evidence has supported the role of iron dysregulation [jl note: not overload) in the pathogenesis of multiple sclerosis (MS), as iron is essential for myelin formation and oxidative phosphorylation. We studied indices of iron metabolism, such as serum iron, ferritin, transferrin and soluble transferrin receptor (sTFR) levels in 27 MS patients. Seven patients had chronic progressive active disease (CP-A), six had chronic progressive stable (CP-S), ten had relapsing—remitting active (RR-A) and four had relapsing—remitting stable (RR-S) disease. sTFR levels were found to be significantly higher in CP-A (P=0.021) and RR-A (P= 0.004) patients than in controls. sTFR levels were also elevated in CP-S patients but did not reach significance (P=0.064). sTFR values in RR-S patients were comparable to those found in controls (P=0.31). Ferritin levels were significantly elevated only in CP-A patients (P= 0.002). Patients of the CP group had significantly higher ferritin values than the RR patients (P= 0.004). Haemoglobin values as well as iron and transferrin levels were within normal limits in all patients. In conclusion, the increased serum sTFR and ferritin levels in nonanaemic MS patients with active disease reflect the increased iron turnover. The mild elevation of sTFR levels in CP-S patients may indicate active inflammation with ongoing oxidative damage that is not detectable by history or examination.

interesting...

Interferon β therapy increases serum ferritin levels in patients with relapsing-remitting multiple sclerosis AbstractSerum ferritin levels have been found to be increased in patients with active progressive multiple sclerosis (MS). However, its levels are reported to be unchanged in stable and in active relapsing-remitting (RR) form of the disease. No research to date has assessed the influence of interferon β (IFN-β) on ferritin concentrations. In this study, serum ferritin levels were measured in 43 individuals with RR-MS and 38 age- and sex-matched control volunteers. There were no significant differences between controls and patients under stable and untreated conditions. In patients at 12 months after the beginning of IFN-β therapy, ferritin levels were higher in women and in men, in comparison with baseline (71.4 ± 58.6 vs 43.4 ± 29.9 ng/mL, P = 0.0006 and 216.0 ± 124.3 vs 127.8 ± 74.9 ng/mL, P = 0.0022, respectively). These results suggest that larger prospective studies are required to evaluate the role of serum ferritin in MS and its potential usefulness in monitoring responses to immunomodulatory therapies.

please note that the women are drastically lower in ferritin than the men, and that while the men would be considered iron replete at levels above 100, and possibly toxic above 200 (i can't back that 200 toxic thing up yet), the women are definitely in a 'probably not deficient' grey area both before and after.. .

These results suggest that larger prospective studies are required to evaluate the role of serum ferritin in MS and its potential usefulness in monitoring responses to immunomodulatory therapies

a classic example of a stupid conclusion. the whole study completely ignored zinc - iron interactions. i would say what this study shows, if we are going to ignore zinc, that we need to be concerned about the effects of interferon therapy on serum ferritin in men with ms.

either way we are NOT looking at iron overload in the average ms patient, male or female, with or without interferon.

if i am able to get solid backup on the 200 toxic comment i will relay.

@squiffy - love the msrc zinc info all in all, even though i have used bloodwork for my levels rather than the taste test.

the problem with blood tests for various nutrients Jimmylegs is that most are just measurements of the serum level--and your blood goes for homeostasis, no matter how sick you are (one ex, you blood calcium levels rarely are out of range, yet you might have severe osteoporosis, which might be from poor utilization of calcium)--serum measurements do not reflect the actual usage of the nutrient--ie, whether is being utilized correctly.
That is why you should not just use hematocrit to measure iron--the iron panel reflects differing aspects of iron's usage.
So we get little info from the blood ranges that you mention--other than that you do have a certain amt of the nutrient in your serum (so if grossly deficient, this would usually be reflected).
Red Blood Cell measurements are about the best tests available for general use right now, and even that is not very good re:usage. So if your insurance will cover it ( and many won't), RBC Zinc would be the best blood test to get re Zinc. You often see the Mg level in serum as okay, but the RBC level as not good--same with potassium.
With copper, the RBC would be best, but again not covered usually--so then get a serum AND a ceruloplasmin level of copper done, so can get some idea of the useage.
There are some specialty lab companies that do specific tests re nutrients, but these are most often not covered by insurance, and are expensive--and your general dr will not request these tests, even if you ask.
Medicine has long neglected nutrition, and is reflected in this lack of proper laboratory testing for nutrient usage in the body.

I suppose what I'm referring to is a sub-set of people with MS who also have iron-loading genes. It is now generally accepted that Tsat (transferrin saturation), is probably the more important measure rather than ferritin, which can be elevated for other reasons, in measuring iron overload.

The point I'm trying to get across is that faulty iron metabolism, not overload as such could be the issue. Zinc could be part of that. My zinc levels seem OK.
Hepcidin is actually the master regulator of iron homeostasis.

What doctors seem to be doing is just as you've shown above, comparing tests to hemochromatosis patients level to see if the iron disregulation is damaging. It's a different fish, but the clues are there. Standard iron tests don't include transferrin saturation, or hepcidin. You just get a singularly meaningless ferritin level and they send you away.

There is no tendency for people with hemochromatosis to get MS.
But if you have an iron loading gene, the outlook for you is much worse. More severe, faster progressing.

I can't get past what happened to me I suppose.
I start to get a seriously heavy fatigue for a few months, my blood tests showed normal/high iron levels, normal/high ferritin and veryhigh transferrin saturation, doctor didn't blink, two weeks later i developed my first brain lesion and lost the use of my right hand, the lesion location corresponded with the hand.

The only way I have got rid of the fatigue is to phleb, it totally works for me like some magic bullet.

If this magic bullet can work for someone else, even if just in the early stages as I am, even if only temporarily, to get rid of the fatigue (the plague of my life! It's worse than pain, I can put up with pain!). then I have to get the word out. I hope doctors and researchers come from this on all sides.

PS: I'm grumpy as my fatigue is back after around 7 weeks of being "normal". I need another phleb but have to wait till mid-late August o donate because doctors are not taking this seriously.

shye those are NOT hematocrit results - i already replied to you in detail about this, in response to your comments on my regimen thread, but i don't think you have checked back.

the FERRITIN level fluctuates nicely. i have been very successful using a wide variety of common tests to find out where i sit within the 'normal range' and how that differs from 'healthy controls', also within the normal range. i had a whole set of nutrients to work on and i test them at the same time to see how things are interacting. my blood used to be a poster case for ms and now it is a poster case for a healthy control. i have much more functionality back, and i haven't had a relapse the whole time since i got diagnosed - except one worsening of symptoms that turned out to be from magnesium deficiency, and another worsening which turned out to be zinc deficiency.

i have guided my doctor through this whole exploration using tests that are covered for the most parts, and she is good enough to write the requisitions for me.

at the end of the day, people just should not be looking at iron in isolation from other nutrients that are suspect in ms. yes some people have iron overload. that is not the case for every ms patient out there.

and yes bethr ferritin can seem artificially elevated, anemia of chronic disease and all that, that's why you look at other nutrients too. zinc IS part of iron dysregulation - 'normal' zinc levels aren't good enough - is your level close to 18.2 umol/L? because healthy controls sit in a tight range around that average level. ms-ers are down around 11-15 if memory serves (mine was 8.6), but that's still considered 'normal'.

a ferritin test is not meaningless if you get other tests at the same time, which is what i personally always do. iron loading genes certainly won't help the picture especially since ms-ers already have low zinc!

certainly if your iron is high-normal, it's problematic. but, i wouldn't want to see low-normal folks ditching iron sources as if all iron is evil. bloodwork is the key. i hear you re. trouble with docs.. my neighbour moved to this area recently and had to spend considerable time educating his new doctor about phlebotomy - month later he is finally in line for the procedure.

Jimmylegs-
my post really was about ALL the various tests for nutrients mentioned--my point was that the tests available to us are pretty useless in many instances--what you have done with what is available is good--ie, playing the results off each other, and taking them again over time.
But the RBC measurements would tell you much more.
And my point about iron was that there is no one test that can tell you what you need to know--with the current tests, you have to do a full panel, not just ferritin, and not just the usually done hematocrit/ hemoglobin.
And it is good to be low/normal in iron--this requires NO supplementation--iron izeasily, so the less the better.

Last edited by shye on Mon Aug 02, 2010 5:03 pm, edited 1 time in total.

From what I've read, Ferritin measures iron storage, ie: in the liver etc.
Transferrin saturation estimates how saturated the blood is with iron.
This test is not usually performed in regular iron tests. It shows iron avidity. You can be low in ferritin, but with a high concentration. That's why you need a full iron panel done before taking iron supplements. My Tsat (transferrin saturation) was 62% at it's worst (range 25-35% normal for women).
The brain lesion disability hit overnight two weeks after that iron test in 2008.

So theres the difference. Hemochromatosis is a disease of iron storage in organs. I'm looking at the concentration in blood. My HCT is over the top range 47, my Hemoglobin is right on the top range around 156, my blood is rich in iron, always has been. Because I get immediate results from removing blood, I'm more interested in that aspect. I don't think I have an iron storage problem as such.

Iron is not evil.....crikey, it's an essential element, but toxic in excess, question is, what is excess, and how do you measure it? I still eat meat, just maybe a bit less than before, being in a meat producing country it ranks high in our diet. I don't limit foods because of iron content, except the cereals that have added iron and their like.

Interestingly people with HH genes actually absorb a lot more zinc and other non-ferrous metals, the zinc accumulates in their livers with the iron, so people with HH are advised against taking these supplements.
I've got a half measure of that gene.

Genetically we are all so different, that one should never follow others regimes without checking out the intricacies.

Interestingly people with HH genes actually absorb a lot more zinc and other non-ferrous metals, the zinc accumulates in their livers with the iron, so people with HH are advised against taking these supplements.

This is imp info--In all my recent research re: H/H, I've not come across this--where did you get this info? i am concerned, because I am also a heterozygote, and do take zinc and copper supplements. As I said in above post, hard to get a good measurement of these trace elements--my insurance will not cover the RBC amts, so just got blood drawn for the serum zinc, and the serum and ceruloplasmin of copper again (last time got this done, were on the very low end of okay range despite supplementing)--but I know these are not really an accurate accounting. Would really like to read the info on HH persons and their absorbing these trace minerals more readily--might be worth paying for the RBC tests.
Thanks

actually i did run across that bit about higher zinc in hemochromatosis before.. definitely pays to get your own tests done for sure. i have my own regimen and regularly advise others to get their own bloodwork done too. i know the tests available aren't always the best but i stand by what you can learn from second-best info. if everything looked perfect with basic testing and i still could feel something wrong, that's probably when i would take the trouble to dig deeper.

BethR
forgot to post this on phleb anyone thread--since you are here, here it is:
this is from Life Estension:

A study reported in the British journal Gut indicates that drinking black tea rich in tannin with meals can reduce iron absorption. The control group drank water with meals; the study group drank tea with meals. Intestinal iron absorption was measured by studying serum iron-binding capacity and serum ferritin. Results showed a significant reduction of iron in the study group as opposed to the control group. Thus, drinking black tea may reduce phlebotomy frequency in the management of patients with hemochromatosis (Kaltwasser JP et al 1998).

I have read about the tea's effect before, but not that it was significant.

Here you go. If you do a search on "hemochromatosis zinc" you'll find quite a lot of info on deposition in the liver.

Vitamin and Mineral SupplementsVitamin C (ascorbic acid) increases the intestinal absorption of inorganic iron [73]. However, vitamin C deficiency sometimes occurs in untreated patients with hemochromatosis but resolves after iron depletion [74]. Rarely, ingestion of large quantities of vitamin C has been associated with fatal cardiac arrhythmias in persons with iron overload, presumably as a result of oxidative injury caused by mobilization of stored iron [75]. There is no rationale for discouraging patients with hemochromatosis from consuming fresh fruits and vegetables containing vitamin C, but it seems prudent to advise them to limit ingestion of vitamin C in supplements to 500 mg/d (Table 4).

In patients with hemochromatosis, absorption of inorganic forms of some nonferrous metals, including cobalt, manganese, zinc, and lead, is increased [76-82]. Excess inorganic cobalt is rapidly excreted [79]. Manganese and zinc, however, are deposited in the liver and other tissues [80, 82]. Lead, which is toxic in small amounts, is retained for prolonged periods [77]. The role of these metals in the pathogenesis of symptoms and tissue injury associated with hemochromatosis has not been elucidated, but we suggest that persons with hemochromatosis use dietary supplements containing these metals only if a specific nutritional deficiency has been shown (Table 4) [83]. Because blood concentrations of zinc, manganese, and lead are low, therapeutic phlebotomy is not effective in reducing retention of these metals [76, 77].

PS: I'm going to pick up my latest full iron panel results later this morning. Can't wait to see where i am at. All very interesting!
This new Dr. is quite good to consult with, I just asked for the tests and he did them without a blink of the eye, which is not how it always is in the Public Health system. Yaaaah..

shye wrote:BethRforgot to post this on phleb anyone thread--since you are here, here it is:this is from Life Estension:

A study reported in the British journal Gut indicates that drinking black tea rich in tannin with meals can reduce iron absorption. The control group drank water with meals; the study group drank tea with meals. Intestinal iron absorption was measured by studying serum iron-binding capacity and serum ferritin. Results showed a significant reduction of iron in the study group as opposed to the control group. Thus, drinking black tea may reduce phlebotomy frequency in the management of patients with hemochromatosis (Kaltwasser JP et al 1998).

I have read about the tea's effect before, but not that it was significant.

Interesting. In the past, in my healthier years I was always I heavy tea drinker. I switched to coffee a few years ago, I should switch back, but those coffee cravings are hard to fight.

Bethr-
I do recall seeing the excerpt you quote--and noting that it talked about inorganic trace elements-- the supplements i take are organic, and i meant to follow up on the distinction, and then forgot.
"Organic" means that the mineral is bound to an organic material. These materials are generally amino acid complexes, proteinates, chelates, polysaccharide complexes, and propionates. Trace minerals in an inorganic supplement have been combined with an inorganic salt, such as zinc carbonate, zinc sulfate and zinc chloride and zinc oxide.
I know that the organic binding makes the mineral more bioavailable--tht is why is worth paying the bit more for an organically bound mineral--you would pay less for the inorganic form of the mineral, but need to take more in order to absorb what need. With the inorganic, you end up with more wasted.
taking that info and applying to the excerpt quoted, I think they are saying that the usually difficult to absorb inorganic forms are for some reason with hemachromatosis absorbed fairly easily. So, I guess the prob with H/H is not JUST iron absorption, but other mineral absorption also ??? Yikes.... So here I am, getting Chelation to get rid of some minerals, yet supplementing because afraid too much of others is is taken out---and without good lab tests to find out really what is happening, this is a real conumdrum...
probably best at the moment to err on side of taking less, and see how feel, and try for the best tests available, and go from there....

Good luck with your blood tests--let us know--and sounds like you lucked out with your new dr...

Thanks for the bump Good things to report since August. My blood tests (CBC) were not good in August, hemoglobin was the highest ever at 163, lymphocytes were very high, red cells high, hemocrit high, monocytes elevated, and my ferritin was still not under 50, and the fatigue and aching joints were back.

I decided to go ahead with another full phlebotomy in September as with hemoglobin that high I definitely wasn't going to become anemic.
Got the flu straight after the phleb, but at least I wasn't fatigued or aching The relief didn't last long and I came out in the blister rash I've had on and off all my life, tired and sore again. Got a biopsy finally after all these years and I had a rare auto-immune skin malady whereby T-Cells/lymphocytes gather in my skin and erupt out and I had 100's of these things. (I wonder if that happens in my brain!)

Just about all healed up now, just a bit of scarring and hypopigmentation, and it was like it just cleared out my system of something because I'm feeling pretty darn good, considering I havn't had a phleb since September. I went and had my blood tests done again this week
and everything is back to normal, hemoglobin is 146 and my ferritin is under 50 - yeahhhhh.

At the beginning of my search, that was my goal, ferritin under 50, and I'm there and I'm the best I've been in years. If it goes over again I'll get more blood taken.

Re: zinc - I found it made me feel not so good when I tried supplementing, so cut it out fairly quickly.

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